I'm desperately confused and frightened, and looking for advice. Probably quite a long post coming up (sorry).
I'm currently 42 and have been pregnant twice in ten years - once with my first boy naturally after three years TTC and again with my second son following an IVF cycle two years ago. I have some kind of immune problem and heavy periods, nothing else, and we were treating that to conceive.
Anyway, in July, I had a second cycle of IVF to TTC a third child. Something went wrong during the egg collection and I ended up with an A&E visit for internal bleeding & three cysts - a clear cyst on the left ovary and two complex cysts on the right. My fertility consultant became worried after three months and did CA-125, which was elevated, and referred me to an oncologist privately through my husband's health insurance.
The oncologist did an MRI that revealed I had adhesions in my Pouch of Douglas, my ovaries are glued together by the complex cyst (which looks like a classic endometrioma) and the endometrioma is also glued to my rectum. Subsequently, a different IVF clinic did a 3D ultrasound that shows mild adenomyosis.
The oncologist wanted to do a laparoscopy to remove and biopsy the cysts, and remove endo, and, at the time, I was scared of cancer and agreed to do this. However, after speaking to the IVF clinic, they advised that removing the cysts would destroy my ovarian reserve totally. And, after seeing the MRI report, I realised I must have extensive endometriosis - probably even deep infiltrating. I also read some medical research papers that showed that, once the MRI had seen endo, it was highly unlikely I also had cancer.
I didn't really have any symptoms of any of this until my last period, probably because the first IVF clinic had put me on Provera for a couple of months. However, my last period, I had really bad period cramps the day before it started and needed to use prescription codeine + naproxen + paracetamol to sleep (and then I flooded, which is usual for me). About six days later, I suddenly had a bad pain in my hip that made me limp, which seemed to be referred from the right ovary. Since then, I've had a constant gnawing spike pain in my right ovary that is not controlled by any painkillers, plus a slightly elevated body temperature and nausea/retching. I don't know if it's the endometrioma bursting (it had gone on the ultrasound I did last week and I had a pool of fluid in my abdomen - the clinic thought it might be hiding behind an ovary) or the adhesions on the scan, or what.
I've got an appointment for January with the BSGE centre in Harley Street and I'd prefer them to do a surgery, but the oncologist thinks he can do it and has an earlier slot.
I'm currently just completely exhausted, in pain and confused. I have no idea if I should let the oncologist work on me or should go to the specialist centre (even though it takes longer). I don't even know if acute gnawing/knifelike pain in an ovary for days on end is typical for the endometriosis I didn't know I had. I don't see the point in going to A&E again because last time they just gave me painkillers and told me to come back if I had symptoms of sepsis/haemorraghing.
Just wondered if anyone had any personal experience/advice...